Sunday, February 24, 2013

Let's Talk NICU

Adalyn will be 9 months old in 2 days (started this post 3 days ago). I should probably get down as much as I can remember. This may be totally jumbled and all over the place, but the best way for me to remember and write down my experience is to just type and type and let my mind go. So, bare with me :)

I had Naomi 2 weeks and 6 days early; at 37.1 weeks. I was a little worried about the chance that she may need the NICU, but figured she would be fine since she was technically full term. We were able to take her right home. Although, she was so small and not strong enough to get a full feeding from me. Having to supplement and the fact that she slept at least 20 hours a day for the first month or so and then slowly went down to 18 hours a day until she was 8 months old was the biggest sign that she was a bit of a preemie. (Although, I now know Naomi just loves to sleep and does so really well. Compared to Adalyn, anyway.) So when my water broke at 34 weeks and 2 hours I, at first, held hope they could stop the labor. Until I started walking and it never stopped gushing out. Then the contractions started about 7 minutes later and were only about 3 minutes apart from the beginning, before I even got to the hospital.

I knew she was coming and I knew she would need to be in the NICU. But honestly, I held hope that I would be able to take her home when I went home; three days later. I had heard a few stories of that happening. Six and 5 week early babies going home 3-5 days after being born. I just assumed Adalyn would be one of them.

When my doctor came into the room while I was in labor, before I was wheeled back to the O.R., he let us know that he wasn't going to be her pediatrician while she was in the hospital. I was a bit sad, because we really like him and I asked, "How long do you think she'll be in there?" HONESTLY expecting a few days when he said, "It's hard to say until she is here, but at least 3-4 weeks." I looked at Jaren and could tell the dread and weight that had settled on my heart had settled on his as well. We were pretty somber after that. There were so many different thoughts and emotions rolling around during the time I was in labor, I don't think I had any time to sort any of it out.

With Naomi, after they pulled her out they held her up so I could see her; but not with Adalyn, they got her out and rushed her back to the NICU. I didn't hear her cry for a minute or two and I'm not sure if I took a breath during that time. Once I heard her shrill scream and that she weighed 4 lbs 11 ounces I felt so relieved. More than I thought, and that is pretty good for 6 weeks early. I truly didn't understand what it meant to have a Preemie and all that has to happen before you can take them home. I wanted so badly to see her, but couldn't until I was able to move my toes.

I went through the recovery room and sat in my room trying and trying to move my toes. At this point it was about 6 a.m. and my poor Jaren was haggard. He had been in there seeing her and all of the tubes and the I.V. and wires and how little she was really had an effect on him. My nurse was really nice (happened to be the same one when I had Naomi), as soon as she saw the tiniest bit of movement from one of my toes she let Jaren heft me onto a wheel chair and take me to see her. Seeing her for the first time was so difficult. I couldn't touch her, because I couldn't get off the chair (she was lifted high and in the incubator), and she was so tiny and hooked to so many things. I felt so bad that I couldn't keep her in longer. Sad that I didn't know I was in pre-term labor for a week. Sad that my pregnancies were so horrible and my body can hardly handle them. Sad that Jaren had to go through all of this. Sad that I couldn't carry a full term baby for him and them.

 It was right here, first time seeing her that the Pediatrician came and told us we don't know how long she will be in, she looks good, she only needed oxygen for a little while. The IV will be in for a while. Don't rush things, baby is having to cook outside of me. Even though she looks done on the outside, she isn't on the inside. All hard things to hear. Then Jaren turns to me and says, "I don't know if we should have anymore...." WRONG THING TO SAY!!  And definitely the wrong time.  I was a giant mess and cried a whole lot about how we can't say that yet, we just need to see. I have already had to drop the number of kids I would like to have because of my body; the thought that this was it, right then when everything was so huge was a bit too much for me. After talking to the doctor and each other we have decided to just wait a long while before the next one and see how that goes, then we will know if we can try for four or not. I am already preparing myself for three when I want four, just in case.

Jaren went home to shower and get Nae's thing to his Mom's while I tried to sleep a bit. He came back that afternoon and wheeled me to see her again, and that was the first time I held her. It was incredibly emotional. She was so tiny and I was so sad that it had taken so many hours till I could hold her and I felt incredible amounts of guilt again for not being able to keep her in longer. That next morning they let me nurse her. She latched right on and I cried and cried because I knew that was the key to getting her to come home. They were all shocked because she was so early, but let me try to nurse her that day and the next.

I had her early on a Wednesday, It was Friday when everything caught up to me. I walked me and my wheel chair in and went to the nurse standing at her incubator and asked how she was doing. "Not good. She just had an apneic episode. She stopped breathing and I waited a few seconds to see if she would start up on her own and when she didn't I had to stimulate her. Whenever that happens it is at least 7 days until they can be released. It doesn't matter how well she does, it has to be at least a week."  She said all of this in a little of an angry tone.  Like it was my fault.  I can imagine how scary it must have been to go through that, I don't know how often it happens since the youngest they take babies into the NICU there is 34 weeks.  I didn't quite know what to say. I was feeling terrified, overwhelmed, sad, exhausted, deflated and totally helpless. Holding her was so emotional. I was alone, she was so little, the nurses were treating me like an uneducated little girl who needed to get the gravity of the situation. Making me feel like I did this to my baby. Broke my own water and wanted her out SIX WEEKS early. I was already going through my own feelings of guilt about it all. What I could have done or what I did do to make that happen. Feeling so incapable of carrying a baby to full term, feeling sorry for Jaren that his wife has early babies and can't seem to cook them long enough making the first few months very, very hard. I was capable of rational thought; I did what I could, what I knew. I made it to 37 weeks with Naomi, so how was I to know I wouldn't with Adalyn? I went to the doctor the week before when I started cramping in my low back. I knew it wasn't normal, I went in, did what I was supposed to and my water still broke. At least I can have children and carry them as far as I can. It's not all my fault. I have no control over my body. But then again.... had I known, I wouldn't have eaten so much salt. Or any, for that matter. I would have worked harder at staying down (although, I could hardly move as it was I was in so much pain), I would have asked for more help. I wouldn't have nested during that last trimester where I de-junked, cleaned and sorted my entire house all day long. Well... up until I was about 32 weeks because it just became impossible after that.

So there I was, thoughts like these going through my head. Feeling terrible for Naomi who was having such a hard time having her Mom just up and disappear one night.  There to tuck her in, gone when she woke up.  She was rather attatched to me at this point. I had just started preparing her for when the baby comes. Talking about how she would go to Nie Nie's house and then a few days later Mama would come home with our new baby girl. I was going to pack a bag with her, we would take it to Jaren's parents house, get her excited about it. But then she was starting to not feel well and was sick and it was another two days until they brought her to me. I still feel terrible about the way everything happened with her. 
We had a fence put around the entire backyard during the NICU time and Naomi loved to watch Jaren exexcavate everything level for the fence installers.

Anyway, I had this little tiny helpless baby who couldn't function on her own yet. She had been poked with needles and manhandled and I felt so bad that her first experiences with this world were without me around much, all alone in an incubator, being poked and prodded. I cried and cried and cried some more. Tried not to sob so loud because I was also very embarrassed and didn't want anyone else to hear. When Jaren came a little later and I was eating lunch I was such a mess. I feel bad that he had such a mess of a wife and a sick, sad, homesick toddler at his parents and a preemie itty bitty baby in the Hospital. And he had to hold it together because the three of us girls were messes. Basically, I look back on the time in the hospital before I was released and it was so hard. That's all I can think to describe it. Alone 90% of the time. Walking 1-2 miles back and forth from the NICU to Mother Baby where my room was, over and over all day and night while healing from a C-Section hours old. I walked a wheel chair, I'm convinced the reason I was able to move so well after only a week postpartum is because I was forced on my feet the second I had my catheter out and only stopped walking to be with the baby or eat or sleep.

Each time something new came up it felt like such a blow. Such a set back. The feeding tube going in meant that she couldn't eat from me. (I know it was necessary, I totally understand). Each time I went in for the first 4 days or so she was losing weight. They were tsk tsking me for taking her out of the incubator to HOLD her or try to feed her. I stayed until midnight Saturday night, my very last minute able to be there. Sunday morning they told me I couldn't nurse her anymore because she was too weak with Jaundice and fatigue at trying to nurse and keep up her temperature. I could do kangaroo care and that was it. Cue another intense melt down. Feeling guilty for trying to feed her and wanting to feed her when she wasn't strong enough to eat. And how doing so was wasting her away. This was also the day they put in the feeding tube. Which made me sad all over again. Putting a tube in her nose, down her throat, making her gag, into her stomach and then how uncomfortable it must have been just sitting in there. She would pull on it sometimes; get her little finger hooked. Every consoling word, "She wont remember any of it.", "It's actually not that uncomfortable and it's so quick to put in.", "She has to have it in order to grow and get out of here.", "It's actually better because we can get all of the air out of her tummy with it and she wont have gas bubbles." All of it didn't make me feel a whole lot better. I still felt so sad for my tiny baby. And for my toddler at home.
Jaren and Naomi were sick during this time.  So Jaren wore this incredibly uncomfortable mask when he came to see her until he felt better.
This was how I fed her until I could nurse her.  And even after that we still fed her through the tube.  
The highlights of the hospital time, aside from every moment I got to hold Adalyn, especially Kangaroo Care where I was so close to her and I slept, she slept, and it was peaceful. Was when my friend Jessica came to see me and my brother, Nathan and his wife Stephanie. Jaren came by at least once, sometimes twice a day. He was still farming and then had to show Naomi that we both didn't just disappear. She needed him. My Mom came when I went home and took care of Naomi and the things I couldn't because I was gone so much. When I was home I either slept or held Naomi. But every time I left Naomi cried and cried and begged me not to go. I would tell her I had to go feed our baby so she could come home and then I wouldn't have to leave. It was all torture. The only way I didn't have massive melt downs every 5 minutes was I tried not to think about anything other than what was right in front of me. I focused on what was at hand; "I'm driving to the Hospital. Driving, listening to music.", "I'm going to the NICU to feed my baby", "I'm going to the NICU to feed and do Kangaroo Care with my baby",  "I'm going to the bathroom",  "Gotta get something to eat...",  "Pump what she wont eat",  "change diaper, say goodbye, go home",  "I'm driving home to be with my girl",  "I need to let her know how much I love her",  "Holding Naomi, telling her about Adalyn, showing her pictures".  But don't think too much about Adalyn. Don't think too much about Naomi and what this is all like for her. Don't think too much about Jaren and what he must be going through. Don't think about anything but what is in front of you. It went on and on like that for the whole 17 days she was in.  Each day was a struggle like this.
She loved the elevators and wanted to ride them over and over.  Then when she saw my wheel chair she wanted to push it everywhere.  It was all a bit ooverwhelming to her.

The first time they let me try to nurse her again; after she showed 2 days of weight gain, she would not latch. I tried and tried and nothing. I was devastated. She had been doing so well! I understood the reasoning for not letting me nurse her, but I knew she had forgotten, or just didn't need to work for it because she wasn't hungry. She was being fed strait to her tummy. It was explained to me over and over again that the sucking reflex develops during the 35th gestational week, so I had to give her 4-10 days. But she had been doing it! She KNEW how. So I continued to try. Over and over again for the next 3-4 days. Crying each time she wouldn't. I kept telling her, "Baby, you have to eat. You HAVE to eat from me if you want to come home. And you want to come home, baby, this isn't home. You have a big sister that wants to meet you and she loves you already. And Mama can be with you all the time. I wont have to leave you. You just have to eat, baby. Please eat." Those were basically the exact things I remember saying while trying to get her to latch. When she did I cried and cried (again and some more) and felt so grateful. With her starting to eat from me there was a teeny bit of light showing towards the end of the tunnel. They continued to tell me not to expect anything. That usually they have babies there till they hit around 39 weeks gestational age (which would have been another MONTH). She was scheduled to come out June 15th (37 weeks)! They were telling me that she wouldn't come home till end of June.
This was how she ate when no one was able to hold her.  See her syringe hanging at the top of the picture?  She was on the billi light for a good 4-5 days and even though they continued to turn her on it she still developed big red spots :(

Once she latched I asked when we could start calculating percentage of feedings. They had explained to me that she is weighed before and after a feeding to see how much she get's through either me or a bottle. Then at the end of a day they take what percentage she received of her daily intake through an external source. Once she hit's around 80% they take out the tube and then as soon as she get's 100%, 24 hours needs to go by and then she can go home. I felt like they drug their feet starting this. And I wasn't able to come for every feeding to make sure she was getting some through me or a bottle. And they were busy, and didn't always try with her. It's easier to just set her food up to drain into her tummy.
This was the cutest thing to me.  The would roll little receiving blankets and position them around the baby so they felt a little more cucooned.  She loved being on her side with it inbetween her legs and her arms.  It's how I sleep with a body pillow.  Also, this was the first piece of clothing she wore; a purple tie-died onsie.

My sister, Lindsey works nights in the E.R. and those nights she worked, if it wasn't busy she would go up for one of the feedings and feed her. It meant so much to me because Adalyn was being loved and held by a family member. She was doing what I couldn't. And it was another feeding she was getting some of externally. I wasn't pushing very hard. I only wanted them to offer her the bottle and see if she would drink. If she didn't, okay, at least you offered it to her. If she would drink some, but not all, that's okay, at least you tried.

I didn't keep very good track of everything while I was there. I wish I had written about each day as it went. Her progress, my feelings, how Nae and everyone was doing at home. But, I never had time. And it felt too daunting to type it all in one handed on my phone. I did, however, write down her percentages of feedings. The first day they kept track they didn't try too much and she took 15% through either me or bottle. The next day Lindsey did a night feeding and I did three of the day feedings and she took 36%. Then they started offering a bottle for a few more feedings and she did 47%. Then all of the feedings got either me or bottle and she did 73% and weighed 4 lbs 15.5 ounces (4.5 ounces above birth weight and the first day I wrote down her weight). Last day of the tube in she took 95% of feedings and weighed 5 lbs .05 ounces. They took the tube out and she came home the next day weighing 5 lbs 3 ounces. Rule of thumb is once they hit their birth weight they usually are strong enough to do all the feedings through Momma or bottle. That held true for Adalyn. I think she could have come home at least 2 days sooner if everyone had worked a little more with her. I was only able to do so much since I also had a toddler at home who really needed her Mama.

I would go to the 10 o'clock feeding, then stay and do Kangaroo Care for 2.5 hours where, if my Mom was with me we would have lunch, talk and I usually would nap a little bit. Then I did the 1 o'clock and then went home.  I left just before 7 p.m. to do that NIGHT feeding. That's what I did all but 2 of the days where I did the 7 a.m., stayed till 10:30 a.m., then would go back for the 4 p.m. feeding. That allowed me to be home for Naomi's bedtime. I don't know what I would have done without my Mom. She came the day after I got home from the Hospital (learned my lesson, if I have a NICU baby again I'll have her come the day I have him/her so I'm not alone. Even if I have the baby during the winter when Jaren isn't farming we will still have two kids for him to be around for, so he may not be able to be around much.).
Meanwhile, back at the ranch, Naomi was stealing my cereal and learning how to eat both cereal and milk off the spoon.  For the most part, it was more licked than slurped.
My Mother-in-Law would take Naomi so my Mom could take me to the Hospital for those first few days because I couldn't drive yet and park so far away and walk. Or Jaren would take me and drop me off and pick me up. Once I was able to drive, I would even pick Lindsey up and she would park my car so I wouldn't have to walk and she would come keep me company. We did that a few times. After about a week I was able to both drive and walk myself there and then I mostly did it on my own for the last week. I kept my nursing pillow there, took my pump and water every time and ate a meal from the Hospital each day. I actually liked quite a bit of it and had this Jello poke cake that was delicious. Oh, and some sort of fudgey chocolate cake. I wasn't too concerned about calories at this point; too much stress. One thing at a time.
She slowly went from being only clad in diaper to a onsie, to pajamas, to swaddled in this with a hat on.  With each drop of the temperature more clothing went on, and it meant she was maintaining her temp while still gaining weight.  Something we had struggled a lot with during the first week.
The Friday night before we got to take her home we went to see Bill Cosby at the College. It was nice to have a little date with Jaren after the stress of the last 16 days. Well... more, in reality. We met at the NICU where I had been feeding her. Jaren was able to spend some time with her as well. We went to dinner at a Greek place (that is no longer in business :( It was good) where I got a yummy Gyro. I am always on the hunt for those. Not any around here, anymore. Then we drove to the College, he got out to sit in our seats so they wouldn't give them away and I pumped in the back of the car and hoped no one peeked in the window. A memory I will never forget.

The show was so funny and it was something I desperately needed. Although, my incision hurt rather badly from laughing so hard and I was constantly thinking about Adalyn in the hospital. I hated every single milli-second of walking away from her little section/room. Every time. And she was constantly on my mind; she wasn't where she belonged and I wanted her home so badly. We had the tickets for the concert months before and weren't going to go, but in the end, my Mother-in-Law wanted Naomi for the night, it gave my Mom a break, too.
This was a glorious day.  When she was moved from the incubator to a "crib".  It meant she could control her own body temperature (huge) and was so much closer to going home.  It was only about 3 days from this 'till we were able to take her home.

The next morning we went to take Adalyn home. It took forever once everything was signed and ready because the nurse had to wait for another nurse to come to be with the one other baby that was in there (it was really hard to see so many babies come and go while I was still there. Stuck.). Finally, she just asked the Pediatrician that was making his notes on his rounds if he would be fine watching the baby while she walked us out. It took all of 3.5 minutes. And driving away was glorious. We drove by Smith Park where the Teton Dam Marathon was going on (I try to run that every year, except for then, because of obvious circumstances) and I thought, "next year, my friends.... next year" I'm starting my training in the next week or two for it and I'm dying for the snow to melt away so I can run outside.

This is a very long, jumbled, emotional post, but that was exactly how that time was for me. I think any woman who gave birth unexpectedly, so early, with or without other kids at home experiences a roller coaster of emotions from very low lows to moderately high high's. When I look back at the pictures or think about it much I usually am in tears (like I was most of the time writing this post). It's hard to understand until you've experienced it and I feel for those who have had to. I cannot imagine anyone who had to go through a longer time with more than one baby there. I feel for them.

Knowing what I know now, we are waiting quite a while longer to have the next one. My body needs the break and so does my mind. I need Adalyn old enough during my third trimester to be able to do everything on her own. Potty, get into and out of bed, climb onto a chair to eat and totally understand and communicate with me. Naomi isn't 3.5 yet and can do all of those things. I will go on a low salt diet from second Trimester on and as no salt as possible at about 26 weeks on. I'll put myself on bed rest (my doctor may, anyway) beginning of third trimester and then pray and pray that those changes will keep the baby in longer. Now that my body knows it can be done and make the pain go away at 34 weeks, we worry about that happening again. Depending on how all of that goes and how early the baby comes and what the doctor says will determine if I can have that 4th baby, like I hope. I am preparing myself now for only 3 so I wont be so devastated if I am not able to have more.
This is 9 month old Adalyn and I today. 

It's something else when you aren't in control of how many children you can have; your body is. It is what it is and I am grateful that I can have children and that they come whole and healthy, albeit small and a little underdeveloped. I count my blessings, which are many.



Scooby and Jon said...

I'm so sorry. I know how hard the NICU is, and how hard having a preemie baby is. It's hard and it's scary to have your life dictated by the hospital's schedule, it's hard to ask permission to get into the NICU to go see YOUR baby. I hope your next pregnancy goes well!

Lena Gilbert said...

Great post whit and I love the pics! Glad your mom was able to help. Maybe in 3 years Steph will be closer and can help you out too. Wish I could've been there!

Jenny Robbins said...

What a difficult experience! I'm so sorry anyone made you feel guilty at all. That's so unnecessary. Your daughters are both so beautiful and you did an amazing job. I'm so glad she's a healthy girl. Great post Whitney! You're awesome!

Scooby and Jon said...

I've been meaning to post one more thing as well: Your babies came precisely when God intended them to come. I became intensely aware of that after learning that if my water had not broken when it did, if I had not delivered when I did, my Tommy could have died before my next appointment. So while the NICU is excruciatingly difficult to deal with, God knew when the best time would be for your baby to come to earth. He was also aware of how difficult it was for you and your little family.